CW: suicide
Underdiagnosed and understudied, endometriosis has long existed largely in the shadows. For one Oxford student who responded to our survey, this meant 15 years of profound suffering and neglect by medical professionals before receiving a diagnosis. For another, years spent living on a legal high while receiving a string of misdiagnoses borne of medical ignorance. For all, an Oxford degree complicates the impossible balancing act of managing an invisible illness.
Invisible it may be, but endometriosis is far from rare: it affects an estimated one in 10 people assigned female at birth. In people with endometriosis, tissue resembling the lining of the uterus grows elsewhere in the body — most commonly on the pelvic organs, but in rare cases, the lungs, eyes, spine, and brain — causing inflammation. The buildup of abnormal tissue outside the uterus can lead to painful cysts and scarring, and adhesions may form as part of an inflammatory process, particularly in late-stage cases, causing internal organs to stick together. Despite broad prevalence, the condition receives only a fraction of the research funding of other conditions with comparable numbers, such as asthma and diabetes.
The disease can cause “severe pelvic pain” including with periods and sexual intercourse, “and is also associated with infertility,” says Dr Krina Zondervan, a professor of reproductive and genomic epidemiology at the University of Oxford and co-Director of the Endometriosis CaRe Centre. “Endometriosis is chronic, and treatments are limited to repeated surgeries and hormonal therapies.”
Like other inflammatory conditions, endometriosis is exacerbated by stress — perhaps the one constant in the life of an Oxford student. A Metro article in 2017 labelled Oxford students as the “hardest working” and “most miserable” in the UK. In an environment where students feel they can’t ‘miss’ a day, let alone a week, managing a chronic illness and its unpredictable and often debilitating flare-ups becomes infinitely more complicated.
“Since coming to Oxford, stress has impacted my pain management methods, which meant I had to see multiple specialists to find a new way of treating my endometriosis,” one student shared. “I was in immense pain whilst still managing to keep up with university demands. I was in so much pain that when [a surgical] procedure was offered to me during term time, I had to accept. This meant I had to travel home during term, have my procedure, and come back and be expected to continue with Oxford life.”
Other students echoed the difficulties of “having to take time out for pain management” and “being expected by society to carry on despite the pain”.
Though some students report having “lenient” and “understanding” tutors, experiences of asking for and receiving university support were mixed. Some found it difficult to know what kind of help to ask for, who to ask, or what the University would do. Others emphasised the difficulty in explaining circumstances “when symptoms fluctuate daily”. One student who applied for an extension following surgery even reports being told by her college academic support officer that she needed to better manage her time. This, she believes, is down to general ignorance surrounding the disease: “if university staff understood that endometriosis is not just period pain, but is actually regarded by the NHS as one of the top ten most painful conditions, there’d be a bit more sympathy regarding how much it can affect your life.”
In fact, most students cited this general ignorance — not only among ordinary people, but also medical professionals — to be the biggest challenge of living with endometriosis. “I have had both the average person and most healthcare professionals act quite dismissively regarding my endometriosis, and it can become very frustrating,” one student said. “I’ve had other menstruating people tell me that everyone gets period pains, or try to equate their period pains to mine, and I find that extremely difficult… A lot of doctors have said that there is nothing they can do, and that is also a big challenge.”
A lack of research funding, public education, and medical training, as well as ubiquitous misinformation saturating the healthcare and public sectors, speak to the prevalence of medical misogyny and its impact on patients with endometriosis. While many lesser-known health conditions are similarly underfunded and insufficiently discussed, few are as common as endometriosis. The societal normalisation of women’s pain is pervasive, as is stigma around menstrual issues. 63% of people who responded to our Instagram poll believed there to be stigma surrounding the disease. 83% thought that endometriosis was not discussed enough.
Chillingly, VICE revealed in December that women in the UK were being denied transvaginal ultrasounds (a pelvic ultrasound used as part of the diagnostic process for endometriosis) because they were ‘virgins’, going against ultrasound guidelines in the UK. This is the latest in a long history of misogyny in healthcare, which impacts the care and diagnosis of people who identify as women. A seminal 2001 study found that women are far more likely than men to have their pain reported as “psychogenic” and “not real”. When in pain, women are more likely to be given sedatives or antidepressants, while men are more likely to be given painkillers. Women are subject to higher rates of misdiagnosis and delayed care than men.
As a result, endometriosis remains under-diagnosed and inadequately treated. Dr Zondervan tells me that for endometriosis, “the average diagnostic delay from first onset of symptoms is 7 years, however there is a huge range, with some women not being diagnosed for decades. We know from many studies, including the Global Women’s Health Study (Nnoaham et al., 2011) that this impacts significantly on the quality of life of women and their families.”
Every student who responded to our survey acknowledged that their quality of life had been adversely affected by medical misogyny and ignorance: from being dismissed and pathologised “for 15 years” prior to a diagnosis, to being prescribed birth control without informed consent, to being made to think that “having cramps that made me want to vomit for days on end and bleeding through extra thick pads in a matter of a few hours” was not only normal, but some intrinsic and essential part of having a uterus. Some recounted being treated “very aggressively” by male doctors when they suggested that they might have endometriosis; some were told their symptoms weren’t worth investigating.
If people with endometriosis struggle to be heard and understood by medical professionals, how are they meant to explain unpredictable circumstances beget by the complex disease to university staff or their peers?
For many, the lack of knowledge surrounding endometriosis has led to feelings of “isolation” and “frustration” at university, further compounding mental health issues already connected to the disease. Endometriosis is associated with several psychiatric comorbidities, including depression and anxiety. All students surveyed agreed that endometriosis has affected their mental health, causing “depression”, “low mood”, “anxiety about symptoms, anxiety about the future, anxiety about operations”, and feelings of isolation. What’s more, people with endometriosis are often put on birth control with little to no informed consent, nor forewarning of the mental health issues birth control can effect or exacerbate. One student shared that, heartbreakingly, due to endometriosis, she developed severe social anxiety and most days would struggle to leave the house. “Once I started birth control, the depression became worse, and I was extremely suicidal. Had it not been for the fact that I am a practising Muslim, I would have taken my life.”
These responses underscore the need for major changes to how we discuss and view endometriosis. “Attitudes to menstruation in general need to change, and what is ‘normal’ and what is ‘not normal’ in terms of menstrual experiences including pelvic pain needs to be understood by everyone,” says Dr Zondervan, who hopes that attitudes towards what have long been dismissed as ‘women’s troubles’ will continue to evolve. “Education at secondary schools is vital there. Talking about endometriosis or other menstruation related conditions should never be a taboo.”
Awareness of endometriosis has, however, increased over the past few decades. There are treatments available and specialists who can help. “Talk to the people around you,” urges Dr Zondervan. “Many therapies are effective in treating symptoms, so seeking early medical advice when you have symptoms is important. Talk to your course director and/or supervisor — and importantly your college adviser. They are there to support you, and will help you work around flare-ups.” Living with endometriosis complicates life at Oxford — and indeed is complicated by life at Oxford — but no one with the disease should suffer in silence.
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